Hi Raz1 hope you don’t mind but over the course of the last year I have come to count Tommy as a really good friend he asked me to read your posts ashe his so worried about you can I ask how you were diagnosed did you have a dat scan of your brain? if not you need to get referred for 1 also you can see for yourself that you are not Welland even admit it I would urge you to seek help if you don’t want to see a doctor or nurse then please ring the helpline where you will get sound advice I know what you mean about doctors and nurses as I looked after my father who had pd and now it, s my turn
Pete if you think I can help like Tommy I, m only to willing to

I am glad to here that you are getting worried, but I don’t want you to get to peruse, up date I have spoken to a NHS last night and they have got my Hosptail appointment naught forward to this week Tuesday, and as I said about the pains I have been asked to take one more med, with a hot water bottle, which I have done alittle more, it my pain in the arms has gone down alittle, and don’t feel that tenssesed . So in a way good news so please don’t worry too much. And thank you for all your support please. I hope you are keeping well too .?

It’s so so nice to hear that the are people here to help, listen to us. I didn’t want to get Tommy so worried, but I have taken advics and mamged to push to get my appointment push forward and hopefully they can give me more clear answers to what is work with, regards the scan I was diagnosed Last year after having Isaacs syndrome for years, than as soon as they started me on the medication first with the patches but my skim couldn’t take it, so started the tables, and was doing well, than the last 5 months not sure what has changed but my body has started to hurt a lot more, with no able to do anything so days at all, with a hand full of sleeping too much or for days on end without sleep at all. So in they did the data scan, that came negative, I had my Hosptail appointment at hospital and my doctor said it happens sometimes, and the fact that I was responding to the medication in a good way, so he said he can still say I had PD, than the next Hosptail I went only to find out that my doctor had left, and a new one will take over my folder. That’s when she told me I don’t have PD and said at your next appointment I will reduce your meds, me and my husband told her why and what the last year has been like, she just said we will have to see. So as I have moved homes and couldn’t get to the same Hosptail I asked to change doctors which she really didn’t want, and I got my PD nurse to ask to do that’s dont know. So now I am in this pain and my PD nursery and help lines they have got the appointment broght forward.so you see it’s this what I am going though, oh on top of this a few people who I know have fibromyalgia, and now telling them of the way I feel apart from the sleep thing the pain level sort of sound like me on some days, I know that sometimes when you are looking for answer everything fits and somethings nothing does .so you see I want to get of the unknown bus now, thank you for taking time out for me too

Good morning Raz 1
I’m so glad you called the NHS last night and managed to get your appointment brought forward (good news indeed)
No-one should suffer as much as you have and be left to think about a change in diagnosis on your own it’s just too frustrating.
Raz please don’t think I worry too much as you are now a member of our club and in here we care for each other .
That is just what we do!
I hope you get what you need from your new appointment
Tommy

Hi Raz1 glad you have sorted out an appointment I have learnt from dealing with my late father’s health issues that if you don’t speak out or stand up for yourself you get pushed aside with the result now if I, m not happy with treatment then I make it known as Tommy said you can contact us anytime you will usually find us on insomnia thread keep us posted on how your appointment goes good luck with your appointment
Pete

Hello Raz,on 31 December I had a n appointment with my PD consultant,and he said to me that he finds it really hard timers I have PD,then he put me on Melatonin for my lucid dreams and restless legs at night,(what a load of for about the Melatonin) they made me worse,then on 10/01/2019 I made an appointment to have a word with my PD nurse,she said first don’t look or walk and talk like a person with PD so I’m thinking like I’ve been wrongly diagnosed,what do you think?,bye.

Well I am sorry that you are having these problems? But from what you have said so fare I think that the doctors and nurse should be seeing you so more, as if your nurse says that she see no signs of PD too. But one the other side I know a person just like that no sighs what so ever, she walks and talks , and shows no sign of any discomfort at all. But she has had PD from the aga of 30, so you see some times when someone says they can’t see it there may be a really reason why. In your case do you have any other symptoms? I still have not had my appoint to talk about what I have. But I. Must say I feel my body slowing down , more pains and most of all having other tests from my hands are arms . Please let me know how you get on.
Raz

I am new to this Forum, have only recently found it. I can’t offer any advice on how to treat your pain and what it is.

I am amazed at how many people are misdiagnosed or told you don’t have PD. I fall in the latter part. I have had PD since 2007 and have been seen by various Neurologists. On one visit I was seen by yet another ‘new face’. This lady didn’t speak good English and at first thought I was miss hearing her. BUT no I wasn’t. She told me I didn’t have PD, so I asked her what it was - her answer she didn’t know but should be happy to know I didn’t have PD. I delved a bit deeper and asked if my symptoms were all of PD she said yes and I was then astounded when pushed further she said I had all the symptoms of PD and in any other person with my symptoms she would have diagnosed them as having PD. How many people are walking about with PD and not receiving treatment when they have it I wonder I have had so many mishaps with PD neurologists - one diagnosed my spinal problems as a disc erosion and it then turned out years later I had a Parkinson back related problem. I won’t list the mishaps but have now got a good Neurologist - I hope !!!

Hi Eve1
I too have had my diagnosis changed after no real response to pd medication.
This decision leaves me in limbo because i am unable to put “I don’t know” on the esa or pip form’s I’m also a carer for my wife which provides me with the grand sum of £23 per week not bad eh .
I sometimes wonder how much it would cost if I had the heartlessness to dump her at the hospital doors or how much I have already saved the government by treating her hypoglycemia myself and not using emergency services.
Anyway I have a new neurologist who is reluctant to use the term PD but he is also an advisor to the DWP.
Here is my theory on this issue
Recently Parkinson’s UK won a case to stop them re-assessing pd patients as it is a degenerative condition and will only get worse not better so I therefore believe that the government has changed tack and simply direct the NHS to be vague in the diagnosis of these cases and not to put pd in writing for some patients now.
Just my opinion as I deteriorate slowly.
Tommy

I am so sorry to hear that you too have been going though all those different doctors and than the thing of it being PD or not, I still have not seen my new doctor but I only hope he/she is better than the last one, I remember my one and only appointment with her, very well spoken and everything, with in doing a quick examination of me she just turn and said you don’t have PD, well that throw me after taking medication and going though all that stress of final coming to terms with the new I had PD, to be told I don’t have it by some one who had only spent less than 10
Minutes in a room with me I couldn’t get over, well anyway I asked her why she thought that, she just said you don’t show any signs, my husband went on to explain if I am having the medication would this be the reason why she can’t see my symptoms? She said no but went one to say she wanted to start reducing my medication and that let’s see if I have it. Well the thought off going though everything just to get my medication all most right just got me so upset and she just said see you next appointment and that was that. Well due to her coldness and really not understanding the fact that you can’t say soon thing that big and expect a person to wait months on end to see if she was right, I asked to be seen by another doctor, as well as the fact I have move areas and that Hosptail is quite fare. First time she just said no, so I rang and spoke to my PD nurse and she told me no I will contact them. Well any way I have my first appointment with a new doctor, but aswell as this my doctors are saying it looks like I 99% have something call fibromyalgia and am waiting to be seen by Rheumatologists too.
But Peter is so right the not knowing is the worst thing if you have or have not. The doctors need to think and remember that we are people too And what this does to us. Well all the best and hope you have a great new doctor .
Raz

Thank you for your comments. I know it sounds daft but, it makes me feel a whole lot better knowing I am not the only one !!

I do find attending my PD Gym Class a real help. Not only the exercise, etc. But the fact I can talk to a group of people with same symptoms and know I am not imagining anything and I really do have PD !!!

At the gym we swop stories you wouldn’t believe some of them and while I really like my Consultant others have a different opinion. JD the Physio who runs the session is very good at listening, which helps get things of your chest. Don’t know what we would do without him.

The Neurologist who said my back problem was disk related filed my file away and wasn’t seen for 4 years or more !!! My GP retired and his replacement asked why I wasn’t being seen by a neurologist and promptly sent off for an appointment hence now being seen.

Hello again Raz,I got in touch with the Parkinson’s nurse,and she told me that the pipexus and Pramipexole were definitely causing the problem,do she’s taken me off of both of them,and she’s put me back on Co-beneldopar and something called Clonazepam 0.5 mg to help with my sleep,and last night so had the best sleep in ages,the nurse also phoned this morning to see what sort of night I had,also yesterday my wife bought me a Revit I’ve circulation booster,promoted by Ian Botham the cricketer,and it worked right where my ankles where the roof tremor starts last night I cannot remember any dreams or tremors,and my wife says she woke up around 6 times,and my legs were not tremoring,so let’s hope this latest regime of tablets and things work ,d9 we can get back to s descent life,but I’m not counting my chickens yet though,bye.

Sorry for my late response, well I am so glad you have been to see the nurse and that they give you something that has helped, that I s good news that the medication they have given him is working and let’s hope that carries on. Just keep the nurses informed too and remember they are there to help you.but thank you for letting me know and keep in touch all the best Raz

Also to let you know that I read your change of diagnosis post some time ago and was appalled at the statement that if someone else presented with your symptoms she would have said it was pd .
But not you.

How vague and frankly obtuse can the system get.

Anyway I have never forgotten your story and have done a bit of research since then but unfortunately I can’t get a foi request to clarify just how many people have had their diagnosis changed after Parkinson’s UK won a case in court preventing the DWP re- assessing Parkinson’s patients due to the fact that it is degenerative.

But inspired by you and others in the same position.
I have wrote a poem highlighting this problem and how the government has found a new way to carry on with their cruel demonisation of the disabled and hope that Parkinson’s UK can find a way to close this loophole.

I even discovered my own neurologist is taking the government shillings as if he doesn’t earn enough with NHS and private work.
And here’s us thinking they took an oath to put patient first.
I suppose the majority still do.
But if they are let’s say levered into a more vague diagnosis.

Then the pd patients are open to assement again and suddenly if they read the posters/threats on the centres walls they will find they are no longer patients but customers.
Who have no legal rights to shop elsewhere.

Anyway the poem is called A conspiracy theorist not me.

Also I would like to point out that the new Parkinson’s UK book is available on Amazon
And all profits go to Parkinson’s .
I have a few much more light hearted works published in there.
Hope all is well

Well it been along time since I have posted on here, I hope you are well, I had my appointment with the neurologist And be too wants to redo the DAT scan, he can see the PD a little, but he wants to make sure that he give me the right diagnosis , the fact that I responded to all PD meds a do feel well and me again when I am on them, so I will keep you up dates and yes there are more people coming out to having PD than a year or a few months of going though bad times thinking who, why and when question so I can sort out things for me, and the family,

Hi Raz 1
Great to hear from you too
and that the PD medication make’s you feel like yourself again.
I would have thought that was all the evidence your neurologist required and do wonder why another Datscan.

As even though my scan was normal the written report was still very vague.
Saying that it increasingly reduced the PD diagnosis but doesn’t rule it out completely.

On that basis I believe I could be a PD consultant .

Don’t be a stranger my friend
You do sound a little more settled now which can only be a good thing.
Tommy

Yes I would have thought that the medicines was all the evidence he needed, but he is saying he is looking at how much the PD has progressed, as even the medication can’t reduce this process . I am still waiting to be seen to talk about the fibromyalgia. I have had a letter to say that the Rheumatologist has referred me to be seen next in April so let’s see what happens with that. Yes I will try and log on some more,